It has been yet another banner year for the Hydrocephalus Association and our community. I hope you joined me in celebrating the recent news of our eligibility to receive research funding through the Congressionally Directed Medical Research Program (CDMRP). It was truly a wonderful holiday gift and a significant win for our community.
HA has spent the last three years working with our allies on Capitol Hill to have Hydrocephalus added to a list of conditions that is eligible for funding through the CDMRP, a program under the Department of Defense. The CDMRP has appropriations of over $247 million, which are used to fund the best scientific and medical research aimed at preventing, controlling, and curing disease. Inclusion on the list of eligible conditions provides access to a substantial pot of research dollars previously inaccessible to the hydrocephalus community. We are looking forward to supporting our scientific community in putting forward research proposals which could result in a better understanding of the underlying causes of hydrocephalus, possible interventions to prevent its onset, and better treatment options for the many children, veterans, and elderly living with this incurable condition.
In addition to our recent advocacy win, I want to share some of our other achievements this year and encourage you, if you have not done so already, to send your year-end gift by 12:00 am EST on December 31, 2014. We are truly on a promising path and I hope you feel proud of what we have accomplished thanks to your loyal support.
Some of our significant 2014 wins include:
- Providing over 2,000 hours of one-on-one support through phone, mail, email, and social media to help patients and families.
- Hosting a series of free educational webinars led by experts in the community on topics ranging from understanding the IEP process to discerning Normal Pressure Hydrocephalus from other aging conditions and reviewing our research efforts in progress.
- Helping to secure a $1.8 million research grant from the Patient Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization which was established by the Patient Protection and Affordable Care Act of 2010. The funding will support a shunt placement study being led by Dr. William Whitehead out of Texas Children’s Hospital in Houston.
- Launching the Adult Hydrocephalus Clinical Research Network. The mission of AHCRN is to increase awareness and understanding, accelerate research, and improve treatments for adults living with hydrocephalus.
- Engaging constituents in our national Advocacy Day program, Rally Day for Medical Research, as well as a special briefing for the Congressional Hydrocephalus Caucus.
- Building strategic alliances with the Centers for Disease Control and Prevention (CDC) and a number of other organizations that address new strategies for global recognition, funding, and prevention of both hydrocephalus and spina bifida.
- Raising awareness through events like our national WALK program and the Annual Vision Dinner in New York City that serves to increase the public profile of hydrocephalus and secure funding to further HA’s mission. Over 101,966,346 media impressions were generated through strategic public relations in conjunction with HA events.
- Presenting at national forums such as the NINDS Non-Profit Forum where patient advocacy groups get to interact with leaders of NIH’s National Institute for Neurological Diseases and Stroke (NINDS) to address better ways to collaborate to address the medical needs of the patient community.
- Engaging members in the community in HA leadership roles. We were pleased to welcome Susan Fiorella; Mark Hamilton, MD; Jennifer Pope; Eileen Rodger; and Michael Williams, MD, to the Board of Directors.
This progress could never have been made by our small staff. It is the teamwork we are so thankful to share with an abundance of highly dedicated and committed volunteers at all levels of the organization: WALK & Special Event co-chairs and volunteers, Community Network chairs and supporters, advocates who participate in our advocacy efforts through our Hydrocephalus Action Network, researchers, clinicians and other scientists, partner organizations, donors, committee members and board members.
We are immensely grateful to all who chose to work with us in fighting this life-changing condition. Because of you, the future of HA is so much brighter.
Please help us continue this momentum by sending your year-end gift today.
Chief Executive Officer